This is an article written by Ron from Ron’s Rants about the need for the distinction between those that are “disabled” and those that are “chronically ill AND disabled.” It’s very well written and makes some really good points that I’ve been trying to convey myself to others. Please read the article and share it!!!
Today I would like to share a story written by a young man who lost his fiancee to complications of Ehlers Danlos Syndrome.
”The Jade Dragon” by Matthew Curran, written in honor of his fiancee, Amy Mak, who passed away from EDS in 2008. It made me cry.
There is a jade dragon pendant I wear constantly because of a broken promise. Usually promises are made regarding difficult or important things that mean a lot to somebody. They are also made in regards to trivial matters, but when those promises are broken they can often be forgiven and forgotten. The important matters are different, more vital to honor, and even when they are easy to carry out, the consequences of breaking them are massive. In fact, the easier a promise is to keep, the greater the consequences to one’s conscious for breaking it.
The jade dragon was a sort of gift from my fiancee, Amy, for protection. I was flying to Pennsylvania for a week, and it was the first time we’d been apart in nearly two years, except for a few nights when she was in the hospital and I slept at home for whatever reason. The carved dragon hangs on a faded red string tied in a stout knot, keeping the circumference too short to fit back over my head. Well, it is now at least.
Before she got in my little Toyota to go stay at her parent’s house for the week I would be away, she stopped and pulled the jade necklace from her purse. “Come here,” she said, and when I complied she reached up, standing on her tip-toes, and began to yank the tight string over my head, pulling down hard. “Don’t take that off until you’re back here!” she said in her stern voice, which was incredibly convincing, despite coming from a sub-five-foot-tall-in-high-heels Chinese-American woman. She accomplished this with her unique way of making a sentence into a single word; what she actually said was “DONTAKETHATOFFUNTILYOUREBACKHERE!” Naturally, I promised to wear it at all times until I returned, on the usual conditions of torture and dismemberment.
I flew out of San Francisco to Philadelphia and stayed with my parents for a week. I worried incessantly, even though Amy was supposedly safe with her parents, they hadn’t seen the worst of her condition which had developed after she had gone away to college; they didn’t know what to expect when she got really sick. Amy lived with a genetic condition called Ehlers-Danlos Syndrome, and it periodically made her life a living hell. EDS, as it’s known for short, directly affects the body’s collagen production, which reduces the strength of connective tissues responsible for things like your joints staying tight, and your skin not stretching like a rubber band. It can also cause curvature of the spine, vision degeneration, slow wound healing, and deadly vascular problems. In Amy’s case, all of these effects were present, along with the gratuitous addition of excruciating pain and nausea on a regular basis, usually described as an abdominal migraine.
Ehlers-Danlos is such a little-known and less understood disease that only a handful of doctors in the world know anything practical about it. Hospital admits were difficult every time. I had to be Amy’s eyes, ears, and voice, as well as her guardian angel and personal EDS expert in the emergency rooms and in-patient floors. By the time I knew she was having an attack bad enough to be admitted, it was too late to ask her opinion. Pain has interesting and varied effects on people, but of all the doctors, nurses, 9-1-1 operators, and ambulance crews I’ve explained Amy’s behavior to, none could understand it. After too many continuous hours of pain her consciousness would retreat, hide away somewhere inside, leaving only a primal creature on the outside, incapable of language and persuasion, until some morphine or sedatives could be injected. The understanding of pain is a huge subject in itself, but the basic problem is that bad pain is always unbelievably bad, because if we always remembered how it felt we would go insane; the problem is that your pain is unbelievable to anyone else because they cannot feel it with you. I pushed the boundaries of empathy with Amy, I watched over her constantly, I cleaned up vomit, I went without sleep, but even I could never share her pain, as much as I wanted to.
Fortunately my week away was relatively uneventful. Except for a few tears of loneliness, both Amy and I were fine. That is until I took the jade necklace off to sleep and hung it on the bedside lamp, where I forgot all about it. It’s certainly not that I wanted to break my promise to wear it, but just like most people take for granted they will wake up in the morning, I took for granted that I would remember the necklace and Amy would never know I’d removed it. Her dragon necklace remained hanging on the lamp for the entire week.
I finally remembered the necklace when I got on the plane back to California. At that point there was nothing I could do, I was going to disappoint the person I cared most about. I called my mom when the plane landed and asked her to ship it back to me right away. With a few days to wait for it to arrive by mail, I had to hope that Amy would be so happy to see me that she wouldn’t think about the dragon necklace for at least that long.
“Where is the necklace I gave you?” she asked me immediately when we got home. I had to confess that I’d disobeyed and taken it off to sleep, being unaccustomed to having anything on my neck. “This is why I told you not to take it off! It was supposed to protect you during your flights.” In Chinese folklore the dragon is a symbol of good luck, and holds power over stormy weather, so having me wear it was Amy’s way of trying to take care of me.
Amy was a very intelligent and educated woman but I think she held onto some ancient beliefs, in a semi-serious way, to stay connected to her parents and their culture. She was born in Hong Kong, but brought to the States as a young child to gain access to more advanced medical treatments. Though her parents were well versed in Eastern medicine, they still recognized the need for high-tech surgical procedures to save her life. Despite her pain, Amy was constantly grateful for this, and took pleasure in mentioning that if she had lived in China she would have been dead before the age of seven. By the time she was 27 years old she had been through eighteen spinal surgeries involving fusions with titanium rods to correct her scoliosis. I often lovingly referred to her as “my bionic woman” because of this.
The necklace was an important symbol for Amy, though she would never explicitly say so. She wanted me to have something of hers with me when I was far away from her, so we would still be connected. Having spent the previous two years as her caregiver, her friend, her lover, her driver and nurse and partner in all ways, I looked at us being together as a simple, undeniable, eternal truth. She talked about marriage and children from time to time, and I would always protest and ask why it was necessary. “Why, if you know I’ll never leave you, do we need to have a wedding?”
Romance was a difficult concept in a relationship made so intense by pain and life-or-death struggles, so there never was a big proposal moment for Amy and I. Without ever really noticing the change, we gradually started talking about our future in terms of before and after we got married. It just seemed right. The moment this idea finally solidified in my head is one I will remember more vividly than any other in my past or future. I was leaving for work after a difficult night spent next to Amy’s hospital bed, and I looked into her anxious brown eyes and said “Bye honey. I love you.” That was all. I didn’t have to say it, because we both knew it was true, but it was important. In that moment, seeing her look back at me, whispering “I love you too,” was when I realized I was meant to spend my life with her; I couldn’t picture a life without her. About five hours later she was in the intensive care unit, in a coma with a ruptured aorta. I had missed all the calls from the hospital until nearly lunch-time. I ran to the ICU with a gut full of dread. She died the very second I got there.
* * *
The day that Amy died, I found the jade dragon again and put it on. Threaded onto a simple red string and tied in a knot, it was never meant to be a permanent fixture; it wasn’t meant to last in the way my life with Amy was supposed to. In the three years since she passed away I’ve always had the jade dragon next to my skin, so I can stay attached to her in some small way, even as life moves on for me, taking me further from the world we built with each other.
Connections can form between people that even death cannot sever. I’ve never been religious (despite my mother’s best efforts), but to paraphrase The Bard, there is more in heaven and earth than is dreamt of in your philosophy. The weekend of Amy’s funeral coincided with the peak of the Perseid meteor shower at the beginning of August. Consumed with grief as I was, I remained oblivious to this fact until some time later. My first night home after the funeral, Amy appeared in my dream. She floated in a peculiar way which felt natural at the time. She took my hand, and dragged my incorporeal being out of bed, directly through the roof, then settled back onto the shingles to look at the sky. We sat there together for hours simply holding each other, watching the shooting stars, pointing out big ones to each other from time to time. All my feelings of loss and heartbreak were for a little while overcome with an incredible sense of peace. When she said she had to go I wasn’t surprised, because I knew I had lost her a week ago, but she said she would return and I felt comforted.
Almost a year after Amy’s funeral, on the morning of her 28th birthday, I woke from a dream about her to find the jade necklace had neatly tied itself a new knot, just above the pendant. Until this point the string had been just loose enough to be removed from my head, but now it was impossible. As tempted as I was to undo the knot to see how it had been made, I felt like it would be a desecration. I think the new knot in the necklace is her way of saying “Don’t forget this time! Or I’ll kill you in your sleep!” That was always an empty threat, but the way she would say it carried all the love in the world.
There is a special kind of bond between people which is born from suffering. Amy suffered more than I thought was possible, and I was there to see it, or at least as much as I could stand. There is another type of bond, born from guilt, that goes along with the bonds of suffering. Amy and I did a lot for each other, and not just because we had no one else, it was because we loved each other so completely it was like we were two halves of the same person. Though this kind of familiarity can quickly decay into taking the other half for granted when times are rough. Of all the things I regret in myself, in my entire life, this is the worst.
I will always see Amy again, I know this as a fact. She continues to visit my dreams from time to time, and whether this is my own imagination or something more doesn’t matter at all to me. I continue to wear her jade dragon, because I promised I would never leave her, and when I see her in my dreams she is peaceful and happy because I’ve kept this promise. I’ve moved on in life, made new plans, tried to become a better person. In every aspect of life I’ve used the jade dragon as a reminder of Amy’s constant strength, and her unwillingness to give up on a life filled with pain as long as a drop of love still exists. Through the dragon I remember the best and worst things possible in life, and Amy’s spirit which never quit, even when her body did.
I found this letter through a personal website of a woman fighting Gastroparesis and Digestive Tract Paralysis. Two things I also struggle with among other things. When I found this letter, I was struck by the honesty and truthfulness of it. So many of us struggle daily with seemingly invisible chronic and painful conditions that many don’t understand. How can they? They don’t live with it, which is why awareness is so very important. It’s also important for those who love us and care about us to understand some things about living with chronic illnesses. Ricky Buchanan also thought about this and decided to construct this letter. This letter has been spread around the internet by those of us living with “invisible” chronic illness because we desperately want those around us to have some insight. It is not meant to be insulting, just informative. Thank you, Ricky!
Having an invisible disability (ID) and/or invisible chronic illness (ICI) means that many things change. Just because you can’t see the changes doesn’t mean they aren’t real.
Most people don’t understand much about these disabilities/diseases and their effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand …
… These are the things that I would like you to understand about me before you judge me…
Please understand that being disabled/sick doesn’t mean I’m not still a human being. I have to spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.
Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker that ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome
Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either.
Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything that I do.
Please understand that the effects of chronic illnesses and many disabilities are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the bathroom and back, while the next day I’ll have trouble sitting up. Please don’t attack me when I’m worse by saying, “But you did it before!”. If you want me to do something, ask if I can and I’ll tell you.
Similarly, my illness/disability may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally.
Please understand that “getting out and doing things” does not make me feel better, and can often make me worse. Chronic illnesses/disabilities may cause a secondary/reactive depression (wouldn’t you get depressed if you were stuck in bed 23 hours a day for years on end?) but they are not caused by depression. Telling me that I need some fresh air and exercise is not not correct and probably not appreciated – if I could possibly do it that, I would.
Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something else more exciting. Illnesses and disabilities do not forgive their victims easily.
Please understand that I can’t spend all of my energy trying to get well from my incurable chronic illness/disability. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability is coming to the realization that you have to spend energy on having a life while you’re sick/disabled. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness/disability.
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought; and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, if something worked we would know about it.
If after reading that, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don’t expect me to rush out and try it. I might not even reply. If I haven’t had it or something like it suggested before, and it sounds reasonable, I’ll probably take what you said and discuss it with my doctor.
Please understand that getting better from an illness can be very slow. And getting better from an invisible disability might not happen at all. People with chronic illnesses have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out, if it ever happens.
I depend on you – people who are able-bodied – for many things.
But most importantly, I need you to understand me.
I have a few decisions to make regarding my health. They aren’t easy decisions to say the least. I’m not comfortable disclosing everything, but I do want to share some of it so that you all know what’s happening with me. The biggest issue is that my gastrointestinal system is shutting down starting with the colon. From what can be seen from the tests I’ve done is that my colon is at least partially paralyzed. I have a few more tests coming up, one being an upper GI series with barium swallow and small bowel follow through. Put into English, it means that I have to go to the hospital in the morning and drink all kinds of barium liquid then have xrays taken at different intervals of time (which I can’t remember what they are). This is done to see how things move through my esophagus, stomach, and small intestine and whether or not they are healthy. After that is a transit study, it’s no big deal really, I swallow a pill with some markers in it that show up on xrays, then go in every second day for 5 days to get xrays and see where the markers are in my GI tract.
The “paralysis” in my gut has gotten so severe that my dr is recommending surgery. I’m not sure all of what goes on during this surgery and I decided to take it one step at a time and see what the tests show. If the the tests show that there is an issue with my upper GI system then surgery is out of the question. Again, because I am taking it one step at a time, we have decided to cross that bridge when it comes.
I’ve also decided to get a second opinion, it couldn’t hurt. Perhaps there is something he will think of that my current specialist didn’t think of. I am also calling up my pain doctor and asking why he is so opposed to a pain pump. See, I take a lot of pain medication. A few are narcotics, which can have many side effects one affecting the GI system. Through a pain pump, however, rather than orally, these side effects don’t happen.
For now, I am willing to try whatever I can tolerate in lieu of surgery. At the moment, I’m attempting a mostly liquid diet to see if that alleviates some of the pain and discomfort. Let me tell you, it’s hard! I have to make sure I get in enough calories and nutrients. Today I started this new regime and by 9pm I was starving! I ended having an English muffin with some Laughing Cow cheese and that was satisfactory at best. Sigh…. I hope it’s worth it!
This video is amazing and worth EVERY second spent viewing!
There is so much debate and controversy about Autism Speaks and what they stand for. Personally, I do NOT believe that Autism is a disease that needs to be cured. I believe each autistic person has something to offer to society. Granted, it’s not without its hardships. I’ve worked with Autistics, I know many, I am on the spectrum myself. I know what I am talking about. To say the Autism is a disease, is something that needs a “cure,” is saying as if an Autistic, or me for that matter, is diseased, needs to be cured. Autism is neuro-diversity, a different way of perceiving, of thinking, of seeing the world. Some things don’t come to us easily, but that does not make us any less in value.
That’s pretty much what I’ve been looking at for the last few days. I’ve been having this horrid pressure in my head for the past few days. It feels like someone is pressing down on my head and gets worse when I sit up and unbearable when I stand and attempt to walk. I have a feeling it’s a combination of skull and spinal compression due to the laxity of the ligaments and tendons holding the joints together. It’s also possible that it’s Chiari I Malformation (Arnold Chiari Malformation) where the tonsils of the cerebellum hang through the bottom of the skull and, in turn, cause pressure on the spinal cord. If it’s still like this by monday time to call the doctor. Question is, which doctor, which specialist?? I honestly have no idea. I’ll most likely end up calling the neurologist since he is the one doing all the MRIs.
With that said, I haven’t really been able to do much the last couple days. Lots of blog reading, web surfing, and Facebook! I’ve been knitting a bit, but not much to show. I’m still working on the cowl wrap using the bane of my existence Life’s an Expedition: Tunisian Lights yarn. This project is never ending. I am now reminded why I prefer lace patterns.
I’m starting the SSDI process. I have no idea what I am doing… I have a phone interview on June 13th to do the application and an appt next week with my primary to discuss things. Now I am working on the disability report online. It’s a hard thing to have to point out all the things you are unable to do. Not very good for the self-esteem. It needs to be done, though. I can’t live on what I am making now and bills are piling up.